Posts tagged ‘Pharma Social Media’

The patient advocacy session on “Cancer and the Internet” at the 2011 European Multidisciplinary cancer congress (#EMCC2011) in Stockholm was well attended by patient advocates from across Europe, as well as industry and communications professionals.

The session focused on building online communities, how the internet can help patients with rare diseases have a voice with policy makers and showcased the new European cancer portal: ecancerHub.

One of the challenges expressed in questions from the audience was the plethora of information available on the internet to patients, and how the number of available sites continues to grow, leading to overwhelm. Knowledge, as Gilles Frydman wryly observed, is always in beta.

ecancerHub is a new online global cancer community and knowledge portal

Superportals such as the ecancerHub are likely to play an increasing role in how patients share information and research the internet, especially if they can curate reliable, accurate and independent sources of information.

Funded by the European Commission’s eurocancercoms project, ecancerHub aims to become a leading knowledge base for cancer information and also where online communities of patients can easily meet to share experiences and learn from each other.

Other than a quick visit, I have not yet had the chance to check the site out fully, but it looks promising. I was particularly interested by the future developments that were discussed, such as focused search engines that will help people find clinical trial or cancer information.

Ultimately, ecancerHub will only succeed if it gains a critical mass of users and to do this, not only must it become widely known, but it also has to offer superior content, ease of use and an online experience that promotes patients to preferentially build enduring and valuable communities on it as a one stop hub, rather than elsewhere.

If you are a cancer patient or have an interest in healthcare social media, ecancerHub is worth a visit.

The most enjoyable part of Day 1 of BIO 2011 for me was the unofficial tweetup at the Old Dominion Brewhouse. Who are the people I have been interacting with on Twitter? Some have twitter handles close to their name, others like me are more cryptic. So at a tweetup it’s common to introduce yourself through the language of twitter, “I’m @3NT.”

Meeting up with someone you have had twitter conversations is like meeting up with a penpal (for those who can remember the days when we still wrote letters and didn’t have email, twitter or facebook). In many ways you already know each other and have common interests, so the conversation is easy. Putting a name to a face is fun.

At the BIO 2011 tweetup yesterday, it was great to meet up with @IAmBiotech, @LacertaBio, @ldtimmerman, @FierceBiotech, @JKureczka, @corytromblee, @christianetrue, @InVivoBlogChris, @lisamjarvis, @jacquimiller (apologies to anyone I missed who was at the tweetup but I didn’t manage to meet).

As this insightful report notes, “people use online social tools to gather information, share stories, and discuss concerns.”

Pharmaceutical and biotechnology companies will have to come to terms with addressing the increasing desire of patients for information, presented in a way that is fair balanced and non-promotional.

The power of social media to potentially change the paradigm of how medical data is gathered was also highlighted in the recent paper published in Nature Biotechnology.

This paper presented an analysis of data collected on the website PatientsLikeMe for those suffering from amyotrophic lateral sclerosis (ALS). While such data will never replace a randomized, blinded drug study, I think that patient community data could have a role to play in areas around Quality of Life (QoL) assessments and post-marketing surveillance.

Increased fast internet access is driving social media and the demand for quality health information. This trend is only set to continue.

Twitter is a fascinating source of news and current affairs that allows you to share in events from a distance. I was, therefore, fascinated to see Tweets from a recent healthcare meeting in which CNN discussed how they are having to compete with bloggers.

CNN claimed that this was due to bloggers violating embargoes on the publication of scientific data. As a science blogger, I questioned whether this naked assertion was correct?

Using Storify, I captured the Tweets and looked into more detail as to “Who cheats and breaks science new reporting embargoes?”

As readers may know, I recently attended the annual meeting of the Association of Health Care Journalists (AHCJ) in Philadelphia. I’m working my way through some posts from Health Journalism 2011, and at the same taking the opportunity to experiment with new social media tools such as Storify.

So far I have written posts from AHCJ on Massachusetts health care reform and the drug development pipeline. Tomorrow, I will be posting on nanotechnology and a presentation by Kacy Cullen, Ph.D from the Center for Brain Injury and Repair at the University of Pennsylvania – my highlight of the meeting!

On the last day of Health Journalism 2011 there was an engaging panel on social media and blogging moderated by Scott Hensley of National Public Radio (NPR).

I’m always looking for tips on what I could be doing better, so it was interesting to hear from experienced journalists on their approach to blogging and social media. I decided to use Storify to aggregate many of the live tweets, and in the process shares the tips from the session.

Storify is an interesting new tool in beta stage of development that allows you to capture social media and incorporate into a story and then embed it in a blog post. Given that Twitter posts are not kept after several days, it’s a useful way to capture Tweets that may otherwise be lost. It also allows you to bring social media together from a number of sources e.g. Facebook, YouTube.

However, there’s room for improvement given the lack of a search feature on the Storify site and to me it seems hard to find stories that others have done, unless you have a link to them. Improved search will be key to success.

I’m also not sure to what extent any content posted on Storify makes it into search engines, or is crawled by bots. Again, if your content cannot be found, then it’s social media utility is lowered. However, it’s always good to try new tools and you can read what I put together on Storify from the Health Journalism 2011 session on blogging and social media below: